Updated: Jul 9, 2021
In this rare world we live in, we think we are the only ones going through something so very unique, until we open our eyes and see there are others right in our backyard who are embarking on a similar journey like us! I have been in "aw" of the Salvevold's from our hometown Becker, MN as I watch them go through the difficult navigation process of raising a complex medically fragile child. Not only do they have Jensyn, but they have 7 other kids. Kristin homeschools her children (and was once upon a time was my daughter's volleyball coach) and her husband is a pastor! I can't imagine what their daily schedule looks like, but Kristin and family seem to do life with such grace. It is easy to see that their unwavering faith is what helps them get through the hard of raising their sweet Jensyn along with their 7 other children! It seems there is something about human nature when others are going through difficult times that we want to know more, how they are doing it, what are they doing to make it through? Kristin has a beautiful way with words to help others understand their journey a bit more. Her sharing about their life with Jensyn helps us see the joys, the fears, the triumphs, and their needs. They have an enormous army of prayer warriors who know when to get on their knees in honor of this precious little girl and their family.
Please read in Kristin's words about their sweet Jensyn and her rare condition called Trisomy 5p.
Jensyn’s Journey with Trisomy 5p
What a privilege it is to share our story about our daughter, Jensyn Marcella. Jensyn is our eighth child, our fifth daughter. Her oldest sibling is her brother, Max, who was a senior in high school when she was born, and her oldest sister, Maci, was a sophomore. She has two other brothers, Tygen (7th grade) and Tate (5th grade). Her three other sisters, Brinkley, Britlyn, and Jakely were 8, 6, and 4 years old when Jensyn was born. As you can see, there was a bit of an age gap between Jensyn and her next youngest sibling. And, yes – that means that I was an older mama when I was pregnant with and gave birth to Jensyn.
Although I was 42 when I got pregnant with Jensyn, my pregnancy did not seem extremely out of the ordinary at the beginning – obviously, I had had many other pregnancies, so I did have a decent frame of reference regarding how I should feel. I definitely was feeling “older” and I was exhausted. In hindsight, I did remember some odd things about this pregnancy – I had a horrible metal taste in my mouth for most of the first two trimesters. This was something different for me. I also got quite a bit bigger toward the end with Jensyn. Because I was older, there were extra ultrasounds for me. At one of my last ones, the doctor got word that our baby might be rather large. I figured this could be true since my seventh baby was 9 pounds at birth. The doctor wondered if I should be induced a week early. It felt as if I was getting bigger and bigger, so I agreed.
Exactly one week prior to her due date, the doctor hoped to start labor by breaking my water. His exact words were, “I have never seen that much fluid in all my years of delivering babies.” Later, we learned that my “biggness” was due to polyhydromnios – a medical condition describing an excess of amniotic fluid found in about 1% of pregnancies. After breaking my water, we started the Pitocin. Again, this was not my first induction. Typically, we begin the Pitocin and I labor for many more hours. I had barely gotten my epidural when I was ready to push. Quite quickly, my 6 pound (not 10 pound) baby girl was born, and she was not looking very well. She was gray and was not crying or really moving at all.
Immediately there was a flurry of activity surrounding our baby girl. Doctors and nurses were checking her out, and eventually, they got her stabilized enough to return her to my arms. The next few days were difficult as it became obvious to us that Jensyn was not thriving. The day after she was born, the rounding pediatrician came to examine her. We had a full room of visitors - all of our kids, my in-laws, and my mom were in the room with us. I always say that, while in the hospital, a good doctor or nurse can make or break your day – this doctor was about to break ours. He began to look at Jensyn and he made comments as he observed different things - crooked toes, dimpled ears, long fingers, wide-set eyes, a large forehead, and so on. When he was finished listing all of her “faults,” he made the comment that would soon rock our world: “This little girl has a genetic disorder.”
This is news that would affect any family in a pretty significant way, but for us it hit a little harder. Our then 6-year-old, Britlyn, has a genetic disorder. I remember my husband and I looking at each other and saying, “we already have a daughter with one of those.” We were in shock. Of course, we had been offered genetic testing during my pregnancy, but we declined when our doctor said that the chances of us having another child with Britlyn’s issues would be slim to none since neither my husband nor I contributed to her disorder.
Since we had already walked this journey with our other daughter, we decided that we could figure this out and that with early intervention, we would meet things as they came and would be aggressive with Jensyn’s therapies and needs.
Jensyn’s first hospital stint happened at birth when she had a pretty aggressive bout of jaundice and was not nursing well at all. I was discharged, but she was inpatient for several days. After finally getting to be home as a family, Jensyn got sick exactly one week from her birth. She was not nursing well, so I would pump and give her a bottle. She did not bottle feed well either and after one of her feedings, I noticed she was lethargic and turning blue. I put her in her carseat and we headed to the ER. When we got there, I tried again to give her a bottle. An alarm went off and the nurses ran in to tell me that her oxygen was in the 70’s. They told me to stop feeding her and called the NICU ambulance from Children’s to come grab our girl.
It was then that we really embarked on this crazy medical journey with Jenysn. We followed the lit-up ambulance to the hospital, not knowing the extent of what we would find out when we arrived. Because there was suspicion at birth and because of Jensyn’s sister, genetics got involved right away. Shortly after this first hospital stay, we got her diagnosis: Trisomy 5P. This is a very rare genetic disorder with only 50 known cases and it is not the same disorder as her sister, Britlyn who has a 10Q Deletion.
Trisomy 5P means that part of her P chromosome is completely broken off and is also duplicated in each cell. Those who have this disorder have respiratory issues, seizures, hydrocephaly, and feeding problems. We also learned that the issues in my pregnancy are associated with this genetic disorder. Jensyn’s failure to thrive, her swallowing issues that led to respiratory distress, and repeated pneumonias were beginning to make sense.
After many different stays in the NICU, I remember thinking that although our daughter was very sick, she just needed to get stronger, and we needed to figure out the best care for her. After two months of struggling to get her to feed on her own, we were told that we should try a feeding tube for her. This felt like failure all the way around. Why couldn’t we get our baby to eat? Why was this so hard? What we learned is that she had a weak swallow reflex and when she ate, she would aspirate. When she aspirated, she would get pneumonia. When she got pneumonia, we would be admitted to the hospital. We were told the feeding tube would be for awhile and that we just needed to get her thriving. She is still 100% tube-fed today.
The severity of her condition became real to me during an appointment with her pulmonologist. My husband and I were supposed to go on a trip to Dallas. I mentioned that we would take Jensyn with us and she told me that was out of the question. She went on to say that we should not take Jensyn out of the house for any reason. This was during late fall, so she was concerned about the cold and flu season and how that might affect someone as medically fragile as Jensyn. Still, I thought she just needed to get stronger and then she would be able to progress and grow and do all of the things that a little girl can do. With Britlyn, she did not walk until she was 3 and she did not talk until 4, but she eventually figured it out. I assumed that would be the same for Jensyn, but I was beginning to see that she was a very unhealthy, fragile little girl.
The feeding tube did help to stabilize her a bit, but just a couple of months later, her seizures began and we embarked on a new leg of her journey. Life was all about keeping her as strong and as healthy as we possibly could and that meant doing whatever it took to keep her out of the hospital. Unfortunately, we became regulars at the hospital and it truly became a home away from home for us. After a particularly long stint where we were dealing mostly with seizures, she had been given a lot of medicine to combat the episodes. This resulted in her sleeping for about a week in a coma-like state. It was after that stay that we came home on oxygen. That was two years ago and she still requires oxygen all day, every day.
Jensyn is four years old. She has been in the hospital for a total of 263 days which is 15% of her life, has had 3 intubations and over 20 ambulance rides. She takes 20 meds daily and sees 15 specialists. Obviously, my initial thought of her needing to get stronger and over some proverbial medical humps did not pan out. It has become very clear to us that Jensyn will always struggle with her medical issues, but we are grateful for each and every day that we have with her. This past September, Jensyn was ambulanced to the hospital and it quickly became clear that she was very, very sick. She was intubated upon arrival and we discovered that she had a pretty severe urinary tract infection which caused her respiratory issues to flare up.
I highlight this hospital stay, because from start to finish, we were inpatient for 40 days, she was intubated twice, and we almost lost her twice as well. During Covid when visitors were not an option, Jensyn was allowed the chance to have her entire family and extended family there to visit her. Her doctors and specialists prepared us for the worst and advised us against a second intubation. At this time, Jensyn’s sister Maci was serving as a missionary in Mexico. We knew that we needed to get Maci home in time to see her baby sister. In order to buy time, we opted to go against what the doctors advised and had them put the breathing tube back in. Maci made it in time, Jensyn regained her strength, and she is still part of our family today! We praise God for the many prayers and for good, Godly wisdom to make the decisions that we did.
Recently, Jensyn had an MRI that showed leukoaraiosis, or white matter disease. This is a progressive disease that affects the nerves that link various parts of the brain to each other and to the spinal cord. These nerves are also called white matter. White matter disease causes these areas to decline in their functionality. We do not know for certain what this means for Jensyn or for her life expectancy, but we are grateful for every day that we get with our little girl. She brings such joy to our entire family and it is a privilege to be her mom.
- Kristin Salvevold